Surgery

It’s “Chronically” Close To Christmas!!

~ Sam ~ 6 Comments

It’s on its way! There is no stopping it! Christmas is coming!

That thought will either excite you or leave you trembling with trepidation. There may be an in between reaction but generally the Christmas/ Holiday Season and the lead up to the big day, is forefront of mind by mid November.

For those of us with chronic illness we tend to approach the season with a little dread mixed in with joyful anticipation.

We simply can’t keep up with expectations of others, or the expectations we used to put on ourselves in our healthier days.

Times have changed.

A Trip Down Memory Lane – Christmas Past

I love Christmas. First and foremost I love the reason for the season. I love that we are celebrating the birth of Jesus.

My Christmas pasts were filled with preparing Sunday School classes for the Christmas Eve Nativity play. Choir rehearsals for Carols in the Park. Helping my husband prepare Orders of Service for all the Christmas services so that those who attended, who weren’t usual church goers, wouldn’t feel lost and could participate and relax.

I had rehearsals to attend for my annual Christmas Eve Service solo performance of “It came upon a midnight clear”.

In between all that I was Christmas shopping, wrapping presents, decking the halls, baking our Christmas cake. I was also working full-time and involved in numerous Christmas celebrations at work.

Every year we would decorate the Banking department I managed. We’d put on Christmas treats throughout December for the 350 staff. Morning teas, afternoon teas, team parties, you name it…we did it!

I set up a department Christmas choir at work and complete with singers, guitarists, a violinist, bass player and trumpeter, we moved through each level of my departments building, spreading Christmas cheer  through song, like the Victorian Christmas carollers of old. So much fun!

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On Christmas Day I would head to church in the morning with my husband. After the service we headed together into my work, where we would hand out Christmas gifts to the staff on duty. We’d help set up a Christmas buffet lunch for everyone to enjoy and then we jumped in the car for a 2 hour drive to spend Christmas with my family.

It was full on. It was focused on giving and celebrating. It was joyous and rewarding on so many levels.

My New Way Of Celebrating – Christmas Present

Fast forward to today and those wonderful memories remind me that so much has changed. My love of Christmas remains. My joy in celebrating the birth of Jesus is even deeper.

My body, chronic disease and disability however prevent me from participating in those wonderful Christmas past activities.

So that could sound like the end of a very sad story. It’s not though. While I loved that full on Christmas celebration, I equally love the quieter relaxed Christmas that is my new norm.

I remind myself how blessed I am to have experienced such joy sharing Christmas so actively with so many, for so many years.

I remind myself how blessed I am now to have a wonderful husband to spend a quiet romantic “Christmas for two” with.

If I had expectations of myself that were unrealistic, this season would be awful. I’d either push myself beyond my capabilities and end up sick or in hospital, or I’d just feel miserable thinking of all I can’t do.

This is my 5th Christmas season with my bone disease. The first two Christmas seasons following my leg break were an adjustment period. I grieved my Christmas pasts. I missed not being able to go to church. I missed family and friends. My beautiful step family came from interstate on the second Christmas post my leg break and that was so special. It helped me have the best of both worlds that year. We had a quiet Christmas Day as they arrived Boxing Day. It was a lovely new memory created within my new limitations. It was such a timely visit as it helped me adjust my Christmas Expectations further, from old life to new life. It was a gentle bridge.

Last year I really embraced our “Christmas for Two”. It was one of the most special times Peter and I have ever had. We had no set expectations. We decorated the tree, we bought beautiful food, I set a table for two with all the trimmings, we listened to Carols, opened way too many presents ( I went a little overboard on online shopping) and we watched a Christmas movie in the evening.

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There was no set agenda. If we ate at 3pm it didn’t matter. If we didn’t get dressed up it didn’t matter.

If I was really unwell or struggling with pain, it didn’t matter. Expectations were non-existent. All that mattered was that we were together, relaxing and celebrating in whatever way we could.

All that mattered was that Christmas Day, the most wonderful day of the year had arrived.

This Christmas – Another Adjustment Period

This Christmas will require even more adjustment to the way we celebrate.

I’ve just had major spinal surgery and I’m struggling to move and function with the days normal essentials, let alone add in celebrations.

We have a plan though. Everything will be scaled back even more than last year. It has to be. We did consider canceling Christmas altogether but quickly reminded ourselves the reason for the season is not the tinsel and trimmings. It’s to celebrate the birth of Jesus and the gift of eternal life that He brings.

With that in mind and the fact that I love the tinsel and the trimmings, we will just approach everything on a mini scale.

Our fibre optic table top tree will be just as pretty as our gorgeous larger one and so much easier to enjoy decorating. I’ll be able to help without ending up in hospital so that’s a bonus! Our nativity scene will be the focus.

We are going to listen to carols and watch as many Christmas shows as we like.

We will have a Christmas dinner but will eat it in the lounge room in comfort while watching a movie or Christmas Special. We’ll keep it all very simple with easy to prepare festive food.

All I Want For Christmas

I need peace and quiet and no pressure. Isn’t that really what Christmas is all about? Peace on earth, goodwill to men?

Glory to God in the highest, and on earth peace, good will toward men. Luke 2 v 14  KJV

Time to heal, time to adjust, time to relax in peace. Time to reflect on what lies ahead.

That’s all I want for Christmas this year and I am so looking forward to it.

Mary and Joseph had a very uncertain and tumultuous time ahead of them that first Christmas. They needed to find a home. They needed to protect their baby from harm’s way.

Life doesn’t always run smoothly and the perfect Christmas card picture isn’t a true reflection of the real meaning of Christmas.

Whether you have chronic illness or not, sometimes stopping and questioning how you can simplify Christmas, can be quite the epiphany.

Now is a great time to set your realistic Christmas expectations. You can then head into this “most wonderful time of the year”, relaxed and ready to enjoy a very special and achievable Christmas…..one that’s just right for you!

Take care

Sam xx

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

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The Spinal Surgery Recovery Road

~ Sam ~ 15 Comments

I’m a week post L4/L5 laminectomy and decompression surgery. I’ve been home from hospital for 5 days and the road to recovery has begun. Well sort of. I really feel like I’m still in survival mode.

My Surgeon tells me we did the right thing proceeding with this surgery. My spinal cord was severely compressed and my legs are already feeling stronger and more stable than they were when standing and walking with aids.

A good early sign. The pain in my lumbar surgical site is quite another story. The pain is excruciating and I’m in for a long 3 months of healing, hopefully with no complications.

It’s still a little too early to say if the surgery has been a complete success. My Surgeon is being cautious and so am I. My body has a habit of behaving badly or surprising us with the most unexpected reactions, so we are right to be cautious.

Recovery Is A Process

One thing I have learned over the years is that recoveries can’t be hurried.  They need to respected. Time needs to be given and all precautions and post surgical instructions must be adhered to.

So from a medical theory perspective, a recovery sounds straight forward and very practical.

There is another side to the medical recovery process. It’s the personal effect major surgery has on your life, especially when you’ve had multiple surgeries over a short space of time.

The fatigue of constant pain from recoveries and often complications, seems never ending. I’m again struggling through the effects of waning General Anaesthetic and strong pain killers. Stomach pain, colostomy complications, lack of sleep plus sitting, standing, walking, bending and daily task restrictions, can really make the recovery process ahead a cumbersome time.

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Reflecting Through Recovery

Surgical recovery restrictions can give us the gift of time. We can choose to be frustrated and bitter about facing yet another recovery period, or we can choose to use the time wisely.

I’m choosing to take time to reflect, in the hope of discovering what my path for the best future possible will look like.

Reflection allows me to grieve the loss of my ability to run, to even walk normally, to shop, to go to church, to participate in life with the energy and passion I have always enjoyed.

I don’t ask why me, I don’t feel sorry for myself.

I’m tired of being in pain but I know I’m not alone in feeling this way. I know others face similar or worse battles. Others journey with me.

Strength In Sharing

The strength of my online support forum members, coming together and openly sharing their stories, clinging to the fact that they are not alone, is heart warming.

I also administer an online forum for parents who have children with Juvenile Idiopathic Arthritis. The courage of these parents struggling with the decision to either medicate their young children with toxic chemotherapy drugs, or take the risk of them having such severe damage to their joints they will be crippled for life, is both inspiring and excruciating to read.

Underlying all the individual stories shared in these forums, is a determination and strength never to give up but to make the most of every day. To accept the pain for what it is while choosing to find joy in the simple things of life. To look at life as a new adventure. To fight for some kind of quality in each day.

All grieving what is lost while also looking forward to finding new ways to live, new activities to enjoy and embracing new friendships formed out of adversity.

The Next Three Months

My recovery road is going to feel long. I’m no doubt going to have moments of wondering was the surgery worth it. I had one of those today and I haven’t even left hospital yet! It’s normal to have those feelings and I know to deny them will hinder my recovery.

With Gods grace, I’m going to ensure I focus on respecting this recovery period so I have the best opportunity of living a full and precious life.

Taking time to reflect is so important and I believe it’s the most important part of the healing process. It renews strength, resolve, courage and new dreams and hopes never thought possible, can be forged.

Who knows what new adventures I may be inspired to pursue on my road to recovery.

Take care

Sam xx

Because of the Lord’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness.

Lamentations 3:22-23 (NIV)

 

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

I’m a member of  the Chronic Illness Bloggers Network  the  Grace Girls Facebook Group and the Salt and Light Linkup Group

 

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Happy 5th Stomaversary to Rudolph and Me!

~ Sam ~ 3 Comments

I can’t believe on the 11th November my beloved stoma, affectionately called Rudolph, is turning 5!

For those of you without a stoma it may seem a strange thing to celebrate. While it was life changing, it was also life saving and I will be forever grateful for the day of my stoma surgery.

Something About November

There must be something about November and surgery for me. I’m about to undergo lumbar spinal surgery in less than 48 hours. It’s funny how your mind begins to think about the logistics of moving post surgery…..or maybe that’s just me. I’ve been contemplating how I’ll have a catheter when I wake up and how relieved I am that I won’t have to think about using a pan or getting up before I’m able.

I then realised another reason for being grateful for Rudolph. No bed pans for that end either. Just the convenience of my stoma bag. All areas covered. See, there really are bonuses to every situation if you look for them.

Rudolph and Rosie

One of the things I am definitely celebrating as my 5 year Stomaversary comes around, is the friendships I’ve made in the Ostomate community.

My closed Facebook support forum, Medical Musings with Friends has quite a few members who also have stomas. We share a special bond, a knowing understanding.

Not deliberately, three of my Administration team have stomas, all of us for varying reasons…..Crohns Disease, Ulcerative Colitis and a Non-functioning bowel. Their friendship means so much to me.

There is one friendship that has always been extra special. We shared the same Surgeon and without knowing it at the time our stomas were created only a few days apart.

Our paths crossed through an online stoma forum quite by chance. Our stories were so similar and we clicked instantly. Our friendship blossomed via texts, phone calls and we eventually had the opportunity to meet in person. What a special day that was!

Over the past 5 years we have journeyed through so many highs and lows of life and all as a result of meeting because we had a stoma. We have also laughed,sometimes cried, over the antics of Rudolph and Rosie.

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Blessed With Time To Decide

I was blessed to be able to have time to make the decision to have a stoma. While I didn’t have a choice, my Colorectal Surgeon very gently led me through a process, where I could of my own free will say to him “I’m ready, let’s do this”.

Not everyone gets that opportunity. While I’m celebrating a positive health life choice, I also am thinking of those who are still struggling to come to terms with such a radical change to their lives.

Many receive a stoma through emergency surgery due to bowel perforations, a cancer diagnosis and other health scenarios requiring urgent intervention. My heart goes out to those in that situation.

My husband and I usually do something special to mark my Stomaversary. This year I’ll be in hospital recovering from spinal surgery, so celebrating will not be at the forefront of my mind.

I believe it’s good to take the opportunity to reflect on life changes. It’s important to me to take a moment, to remember what life was like before my stoma and why having it has been such a positive experience.

If you’re interested in “why” Rudolph is a permanent fixture in my life, you can read the full journey in My Stoma Story, A Happy Ending

Happy 5th Birthday Rudolph and thank you for making my life so much better!

Sam xx

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

I’m a member of  the Chronic Illness Bloggers Network  the  Grace Girls Facebook Group and the Salt and Light Linkup Group

 

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Surgery Can’t Come Soon Enough!

~ Sam ~ 17 Comments

My Spinal Specialist appointment went well. I think that’s the best description under the circumstances.

I managed to walk to his office using my walker and I thought I was doing well. As I entered his room I smiled as brightly as possible.

However the pain in my eyes and my inability to move faster than a snail, revealed a very different picture to my Dr than the positive one I was working on presenting. He knew just looking at me I was doing far from well.

He grimaced and said;

“So it’s clear the facet joint injections didn’t work” 

I looked up as I struggled to sit in the chair in the office and replied;

” Unfortunately not, although the anaesthetic worked a little for 24 hours”

I knew I was grasping at straws at this point and so did my Surgeon.

Nothing Like Getting Straight To The Point

I thought we would sit down and have a chat about numerous options. Well, a few options….it was clear we were getting to the end of possible treatments. In hospital we had discussed radio frequency neurotomy as the next step, so I was at least expecting to revisit this idea.

Apparently not!

My Dr turned his laptop around to show me my MRI. I had seen it before but he had been studying it. He pointed out the spinal stenosis was severe and was obviously not going to respond to conservative treatment. We had tried.

“You really only have one option available to keep you out of a wheelchair. You need decompression surgery.”

Those words lingered in the air for a moment. I wasn’t expecting him to be so definite. We both knew that surgery of any kind would be risky for me. I’ve had so many and my bones just have a mind of their own. We never know what to expect when I’m opened up.

I raised this fact. He acknowledged he was concerned about what he would find. Would my bones remain stable? Would they be so hard he’ll need specialised equipment? We just don’t know.

So why are we even contemplating going ahead?

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We Have No Choice

We simply don’t have a choice. The pain from the stenosis is horrendous. The Spinal cord compression is dangerously close to requiring emergency surgery. Best to avoid that scenario. I also have a lesion at L4. It may be a bone spur or a cyst but it’s not going away and will only get worse.

I can’t even begin to think what “worse” would be like.

So, I’m having surgery. Open lumbar laminectomy and decompression spinal surgery at L4/L5, on the 9th November.

It will take 3 months to recover with the first 6 weeks being very difficult. I won’t be able to sit or stand for longer than 15 to 20 mins at a time. No twisting or bending. No housework. No lifting. No stretching up. I will only be able to sleep on my back.

My situation and recovery will be complicated by my bone disease and especially my non-union broken left femur and foot fractures.

All we can really hope for is eventual relief from the intensity of my back pain so I can better manage my leg and overarching bone pain.

Trust in the Lord with all your heart, and do not lean on your own understanding.

Proverbs 3 v 5

Taking The Risk

Sometimes in life you just have to take a risk. You have to gather all the information you have available and weigh up the cost and the benefit.

I don’t like the thought of the tough recovery period but I’ve been through major surgery before and I can do it again.

I know there is a chance the surgery won’t work but at this point I have nothing to lose.

I know my Surgeon is not entering into this lightly and he has his own concerns. That gives me confidence that I am in good hands. He cares and he will be doing every thing he can to mitigate the risks.

Does that mean I won’t get cold feet? Believe me I will definitely be thinking of reasons to run the other way.

Thankfully I do tend to face things head on so I’ll be proceeding. When I do get moments of feeling like cancelling, my body has a great way of reminding me that I have a problem.

Accepting The Inevitable

I had a goal of getting to a local shop for 10 mins this afternoon. A goal that failed miserably!

My back rendered me unable to move at all from 7pm last night. Same situation that landed me in hospital 2 weeks ago. I avoided the ambulance trip this time as I know complete rest is the answer until surgery and I want to be at home in the lead up to surgery.

It was a timely wakeup call reminding me, even if I get an hours relief from pain it just isn’t lasting.

I’d love nothing more than my back to miraculously heal. I’d love nothing more than to not need more surgery.

Sometimes we just have to accept that we can’t have or do what we might like. When our plans have to change, or our hopes are not realised, it’s not the end of the world. It’s a setback.

Finding a way to deal with chronic illness setbacks is the key to remaining positive. It’s the key to survival.

So, my advice…..no matter what difficulty you’re facing, acknowledge it, cry about it, talk about it, research all options available and then set it all aside and do something you’ll enjoy.

My husband helped me get up and dressed and seated downstairs today and we enjoyed a favourite Father Brown episode. I also enjoyed some online shopping……a couple of dresses that will be easy to slip on post surgery.

So life isn’t all that bad, despite pain and disability. There are always options to salvage setbacks and disappointments

One of the biggest positives of my recent setback is quite simple. It’s brought a change of attitude and I can honestly say…..Surgery can’t come soon enough!

Sam xx

I can do all things through him who strengthens me.

Philippians 4 v 13

If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m also a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

I’m a member of  the Chronic Illness Bloggers Network,  the  Grace Girls Facebook Group and Salt and Light Linkup Group

If you would like to read a little more about my journey, here’s the link to My Story

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It’s Never As Easy As……

~ Sam ~ 9 Comments

How many times have you said, “No worries, that’s as easy as…….”

I know I’ve said it countless times during my life. In fact that’s how I used to live my life. Everything was seemingly easy and if it wasn’t I could quickly convince myself it was.

I had a positive can do, absolutely, yes to everything, kind of attitude to life.

I still have that attitude but my chronically ill, crumbling and disabled body, really does struggle to get with the agenda.

A Gradual Awakening

I feel blessed my change in life circumstances have gradually evolved. Many are faced with a drastic and life altering diagnosis in the blink of an eye. A serious accident or a terminal illness can so quickly turn life on its head.

My gradual awakening, while a blessing, has not been without its challenges. I suffer from fatigue due to my bone disease pain and autoimmune diseases but in general my brain manages to stay alert and functioning. At least I’m telling myself that at this stage!

The downfall of an active and alert brain, is the message “it’s not as easy as….”, fails to get through.

My brain still has a lifelong program installed, playing the opposite message, “you can do that,  it’s as easy as……”.

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Point In Case

Now I’m not completely stupid. I do know that my disabilities limit me severely. My regular readers will know I have made mountainous changes to the way I live my life.

Where I still trip up, is thinking that something as simple as packing a day bag for day surgery, will take me half an hour.

Ha…..how wrong could I be?

So here’s how that little exercise went;

  1. Got hospital day/overnight bag out of cupboard.
  2. Another bag fell on my foot…..oops a new stress fracture!
  3. Finally opened the bag (after trying to stand on my legs) to find that it was full of things I didn’t need.
  4. Emptied bag and gave surplus to requirement items to my husband. He had come to my rescue following the foot crisis.
  5. Realised that some of the things I thought were in the bag were not.
  6. Climbed on my stairlift for an unwanted trip upstairs.
  7. Gathered required items and headed back downstairs on the stairlift.
  8. Packed my pills ( you really don’t want to know or ask about that saga!)
  9. Realised I needed a few items from the shop and some prescriptions required refilling.
  10. Husband headed out to chemist, leaving me with firm instructions to sit and rest.
  11. I actually listened to his advice as I was in agony and I waited!
  12. Husband came home and I finished packing the remaining “normal” items.
  13. I say normal as next I needed to work out what I wanted to take in terms of my stoma supplies.
  14. I decided to pack each stoma change in a zip lock bag. This system works incredibly well when I’m trying to deal with bag changes and broken legs/feet. It does take time to pull together but worth the extra effort.
  15. Husband decided to tell me I perhaps should pack a little more in case they keep me in overnight. Thanks for that thought! Unfortunately with my medical history, experience tells us its a possibility.
  16. Extra packing gets underway.
  17. The whole process was spread over 4 hours!!
  18. Later that night, we were lying in bed just about to go to sleep, when I remembered I forgot to pack a spare set of underwear!
  19. Hubby got out of bed to put the items on top of the dresser so I’d see them in the morning. At this point we decided we’d completely had enough of this day/overnight bag shenanigans.
  20. Thankfully I still had 2 days to recover before my surgery!!

The Moral Of The Story

There is a moral to this story. It can probably be best summed up as;

With Chronic Illness it is never “as easy as!”

So many clichés spring to mind but I promise I will spare you those.

Basically we need to allow plenty of time to prepare for any lengthy event. Be that a holiday, surgery, a day visit to family or friends.

We can’t just think all will be ok on the day. We can’t just assume a task will take us 30 minutes like it did when we were healthy.

If we do we will set ourselves up for failure. Stress, anxiety, extra pain and fatigue and possibly not even making the event, are likely outcomes of not getting sorted days in advance.

My rule of thumb is, where possible, always allow 2 days minimum to recover from packing/preparing for an event.

We can’t guarantee how we will be on the day of the event, as Chronic Illness doesn’t like to play fair.

By being well prepared we can at least guarantee we will feel better, knowing whatever the outcome, we didn’t deliberately sabotage ourselves by leaving things to the last minute.

“It’s never as easy as, but it’s not impossible with a lot of preparation”

Take care

Sam xx

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m a regular Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

I’m a member of  the Chronic Illness Bloggers Network and the  Grace Girls Facebook Group

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The Tides of Chronic Illness

~ Sam ~ 19 Comments

I was sitting at our local cafe this week, which is situated on a Point overlooking the Bay and beautiful Islands beyond. It really couldn’t be more idyllic and I am blessed to live so close to such a gorgeous place on Australia’s east coast.

As my husband and I were sipping our cool drinks and soaking up the gentle sea breeze, on what was a mild summer’s day, I was fascinated at how quickly the afternoon tide was beginning to roll in.

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Only moments before the water was still and there was no sign of change. All of a sudden ripples could be seen and the mud flats began to disappear before my eyes.

I rarely get out due to my health but this is one special place that I can manage on a good day and it’s perfect to sit back, relax and contemplate life. My thoughts turned to how quickly the tide changes in our lives when living with chronic illness.

One minute everything can be calm and stable and the next we are inundated with symptoms flaring, numerous medical appointments, x-rays and scans, blood tests, poking and prodding, emergency trips to hospital, feelings of bewilderment and concern. The tidal waves keep loudly crashing around us until the crisis is over and the seas are calmed.

I have one goal this year. Stay on calm waters! I’ve had too many years of tidal waves crashing over me with my health. I know most of that wasn’t within my control but I have learned some lessons that I’m hoping will keep me out of the firing line of sudden tidal changes.

As I looked to the right of where we were sitting at the cafe, there was a green tree standing tall and safe as the tide began to creep around it.

My aim is to be like that tree this year. Standing above the creeping symptoms of my disease and not allowing them to swamp me and drag me under.

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So while I know some health events will definitely be out of my control, my plan to simplify my life and avoid anything unnecessary includes:

Reduce Medical Appointments 

I have 6 Specialists on my medical team plus a GP.  I have been seeing 5 of them every 3 months. With the agreement of my Drs, less appointments means less running around and more time to enjoy “non-medical” activities. This year we are reducing to 6 monthly appointments for each Specialist. We have spread these throughout the year so I am not overloaded at any one time. If I do need to speak to them in between they are happy for me to email, phone or make an extra appointment.

Reduce Regular Tests

I need regular blood tests to monitor a number of my autoimmune diseases as well as regular xrays, bone scans and bone density tests to monitor my rare bone disease. In consultation with my Specialists we have reduced my blood tests to bi-monthly and my x-rays/scans to every 6 months.

I’m feeling a sense of relief just writing this!

Avoid Surgery Unless an Emergency 

I’ve had 7 surgeries on my legs over 3 years. I’m exhausted. In the last two I aspirated while under general anaesthetic. My Surgeon and I have agreed “no more surgery” unless a life threatening emergency.

Know Your Disease 

This is probably the biggest key to simplifying my life with chronic illness. I’ve been diagnosed with Rheumatoid Arthritis and Sjogrens Syndrome for 8 years now and it is pretty much under control. It flares but I know that we can’t change my medication because of the risks that has for my bone disease.

We have reviewed every possibility in terms of appropriate medication and we’ve brought in other Rheumatologists for consultation. We have exhausted our options.

I just have to manage my autoimmune disease flares conservatively with rest, heat packs and pain meds. It is what it is.

My Bone Disease is my biggest concern. It is completely unmanageable and has a life of its own. I have however discovered what is an emergency (pathological major fracture or pole breaking in my leg) and what is something I just need to live with (constant foot stress fractures, muscle atrophy worsening, muscle bleed).

I’ve also learned with my bone disease, any significant increase in pain or symptoms will usually reduce to manageable levels within 4 days.  If not I need to call my team asap.

Get Out More

With less appointments I won’t have to conserve my energy to be able to get to them. To prepare for an appointment, I can’t go out for the week prior and I need at least another week to recover. With the amount of appointments and surgeries I’ve had over the past 4 years, we have only been able to get to a cafe a handful of times and we have only taken my mobility scooter out twice since I got it 7 months ago.

That has to change and it now can.

I will be able to go out on better days and know that I have time, days or weeks if necessary, to recover from the “non-medical” outing. Such a lovely thought.

When I feel “the tides of chronic illness life” washing over me, as they no doubt will from time to time, I’m going to think about that green, tall tree standing upright as the tide creeps in around it.

I’m going to remember that there are things I can control and have changed.

I might get my feet wet but I won’t get swamped.

Sam xx

 

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum Medical Musings with Friends. It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

The Next “Leg” of My Journey

~ Sam ~ 20 Comments

It’s nearly 3 years since my left femur snapped in two. Those first two years I can barely remember. It’s a blur of surgery after surgery, hospital stay after hospital stay, recovery after recovery. Actually recovery is probably the wrong word because I haven’t recovered. My left femur is still broken. It’s officially diagnosed as non-union.

A pole holds it together but the two pieces of bone, being compressed together by an interlocking screw at the base of the long rod, rub constantly and cause unrelenting pain.

My right leg has a femur stress fracture and that too is being supported by an internal rod & not healing. That too has aching pain on a daily basis despite a regime of strong pain killers.

My feet also have multiple constant non healing fractures, although amazingly these only really hurt occasionally.  It may be the other pain is just greater.

I have muscular atrophy and bone marrow inflammation in both legs. I have sclerosis in my spine and severe damage to most of the discs in my neck and back.

All of the above is a result of my rare bone disease. It has no cure or treatment so the disability & pain are here to stay.

Rheumatoid Arthritis sits along side my bone disease and has its own set of varying symptoms and pain issues. It is joined by Sjogrens Syndrome, Trigeminal Neuralgia, inflammatory nerve disease & Autoimmune Thyroid Disease is also starting to present itself.

Managing these disabilities and using double crutches makes getting out and about difficult, especially when I have to factor in my permanent colostomy and the care that needs at its beckon call.

So, the above are the facts, the reality of my situation. Facing facts and realities of this nature can pretty much do one of two things.

1. Cause extreme depression or;

2. Motivate you to make a plan to live  well with your Disease.

From the outset I’ve chosen to embrace my situation & plan for the future as much as possible. That plan has included a muti-faceted approach including:

  1. Medical Retirement
  2. My husband becoming my full time Carer
  3. Care agency Support
  4. Building a strong relationship with my Medical Team
  5. Installing a stair lift
  6. Installing Bathroom/Toilet rails & making other changes to our home to cater for my new needs
  7. Keeping my brain active through Blogging/Writing
  8. Setting up an online forum, Medical Musings with Friends, to connect with & help others living with chronic & complex diseases.
  9. Enjoying the little things in life everyday, caring for my soul as well as my body
  10. Planning for my future care with Permanent Residential care approved, if/when it’s needed

The list could be expanded as there are lots of other things I do to ensure I embrace life within my limitations but  you get the idea.

One thing I’ve struggled with is getting out of the house, other than for medical appointments or a coffee at our local cafe.

My husband & I have often discussed an electric wheelchair or mobility scooter but I always wanted to wait & see if my leg would heal. I felt I was giving up on the hope that it might heal if we went down that path.

As my 3 year anniversary of my bone disease diagnosis approaches, I know it’s time to face some more facts. My disease is a permanent disease. Even if my leg could heal it won’t heal properly as the bone & muscles are dead & the nature of my disease is that I have low to negligible bone turnover. Pain & disability will be my lifelong companion.

I’m not looking to go on great overseas adventures or long trips but I would like to stroll in the park with my husband or go to a Westfield shopping centre every now & again. I can’t do that on crutches. At best I can walk 100metres on a good day but that is a huge stretch for me & painful & exhausting.

So, it’s time….time for a new “leg” of my journey to begin. That leg starts with a mobility scooter. It arrived this week & we registered it today. I am the proud owner of new legs….well, wheels to be precise!

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It’s not without its challenges because the suspension capabilities of the scooter is limited & the vibrations through the seat aggravate the pain in my legs. We’re getting a gel cushion which will help alleviate that to some degree. I’m hoping with time my legs will adjust to it & allow me to stay out for longer trips. To begin with we will start slow. A short outing to the park will be wonderful. I can’t wait.

Life with chronic disease requires constant adjustment. There are never neat & easy answers. The answers to our problems are often life changing & take time to digest. For me the key is not to give up looking for solutions to new issues.

We might hope for a particular outcome only to discover that’s not possible but don’t lose hope. Find it in a different outcome. It’s a bit like a sailor adjusting the yachts sails when the wind suddenly blows in an unexpected direction. That happens with chronic disease all the time & we have to find new ways to cope when previous ways cease working.20170719_124352

So far I haven’t got any further than our garage on my new legs but stay tuned as I’m sure I’ll soon be writing a blog all about “The Adventures of Sam & her Sleigh” 😄

 

As we trust God to give us wisdom for today’s decisions, He will lead us a step at a time into what He wants us to be doing in the future.
Theodore Epp

 

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum Medical Musings with Friends. It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m also a Contributor at “The Mighty”  

The Mighty – Author: Samantha Moss